Background Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. Methods A scoping review guided by Arksey & O’Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. Results The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations ( n = 40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. Conclusions The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts. Electronic supplementary material The online version of this article (10.1186/s12913-019-4394-5) contains supplementary material, which is available to authorized users.
Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.
Systematic reviews of self-management programs for osteoarthritis suggest minimal evidence of benefit and indicate substantial heterogeneity in interventions. The purpose of this scoping review was to describe the nature of self-management interventions provided to patients with osteoarthritis focusing on the inclusion and type of education and social support components. We searched PsycINFO, EMBASE, MEDLINE, and Cochrane Library databases from 1990 to 2016 to identify studies addressing community-based management strategies for osteoarthritis that included aspects of disease-specific education and ongoing social support. Results are presented as a narrative synthesis to facilitate integration of diverse evidence. Data were extracted from 23 studies that met our inclusion and exclusion criteria, describing complex, multicomponent interventions for osteoarthritis. All studies included education components, and 18 of these were osteoarthritis-specific. Social support was most often offered through peers and health care professionals, but also through exercise trainers/instructors and researchers, and lasted between 5 and 52 weeks. We charted positive social interaction offered by peers in group settings and emotional/informational support offered by health care professionals. Overall, descriptions of self-management provided limited documentation of the rationale or content of the programs. This suggests that more precise definitions of the theoretical underpinnings, components, and mechanisms would be useful for greater insight into best practices for osteoarthritis self-management programs.
ObjectiveThe overarching objective of the scoping review was to examine peer reviewed and grey literature for best practices that have been developed, implemented and/or evaluated for delayed discharge involving a hospital setting. Two specific objectives were to review what the delayed discharge initiatives entailed and identify gaps in the literature in order to inform future work.DesignScoping review.MethodsElectronic databases and websites of government and healthcare organisations were searched for eligible articles. Articles were required to include an initiative that focused on delayed discharge, involve a hospital setting and be published between 1 January 2004 and 16 August 2019. Data were extracted using Microsoft Excel. Following extraction, a policy framework by Doern and Phidd was adapted to organise the included initiatives into categories: (1) information sharing; (2) tools and guidelines; (3) practice changes; (4) infrastructure and finance and (5) other.ResultsSixty-six articles were included in this review. The majority of initiatives were categorised as practice change (n=36), followed by information sharing (n=19) and tools and guidelines (n=19). Numerous initiatives incorporated multiple categories. The majority of initiatives were implemented by multidisciplinary teams and resulted in improved outcomes such as reduced length of stay and discharge delays. However, the experiences of patients and families were rarely reported. Included initiatives also lacked important contextual information, which is essential for replicating best practices and scaling up.ConclusionsThis scoping review identified a number of initiatives that have been implemented to target delayed discharges. While the majority of initiatives resulted in positive outcomes, delayed discharges remain an international problem. There are significant gaps and limitations in evidence and thus, future work is warranted to develop solutions that have a sustainable impact.
Twelve principles to support caregiver engagement in health care systems and health research Cover Page Footnote Ethics approval and consent to participate: Not applicable Consent for publication: Not applicable Availability of data and material: Not applicable Competing interests: The authors declare that they have no competing interests Funding: This project was funded by a Planning Grant from the Canadian Institutes of Health Research [Fund number410008186] Authors' contributions: KK conceptualized the study and took the lead in writing the manuscript. KMK revised the manuscript versions. KK, AP and JG lead the acquisition of data and the data analysis. KMK, CAA and JP assisted with the interpretation of the data, the addition of concrete examples and insured that the text was readable for a range of audiences. All authors approved the final manuscript. Acknowledgements: The authors thank the participants of the two day stakeholder meeting. The 48 important perspectives that came together and the vast experiences shared, culminated into the insights shared in this paper. The authors are also grateful to the Change Foundation, a policy think tank in Toronto, Ontario, Canada who generously provided the space to hold the meeting that brought together so many individuals to discuss the important topics raised in this paper.
Caregiving experiences are not static. They change across the disease trajectory and care continuum. However, it is not clear how caregiver gender or relationship type is related to evolving caregiver experiences over time. This qualitative study informed by constructivist grounded theory and framework analysis explored the experiences over time of men and women who were adult children and spousal caregivers to persons with Alzheimer’s disease. Forty spousal (10 husbands and 10 wives) and adult children (10 sons and 10 daughters) caregivers to persons with Alzheimer’s disease were interviewed using a semi-structured interview guide. Our findings suggest the experiences of caregiving, examined through a gender and relationship type lens, are complex and variable. The caregiving experience was not related to gender or relationship type alone, but often to a combination of the two. For instance, spousal caregivers did not immediately accept the diagnosis, with wives being more optimistic than husbands about a slow progression of the disease. Adult children caregivers were concerned about the ways the caregiving role would impact their personal and career obligations and sought ways to mitigate the changes to their daily lives. Sons and husband caregivers largely utilized home and community health services to assist with personal care tasks, whereas daughters and wives utilized the same services to allow them to complete other caregiving tasks (e.g., housekeeping). Recognition of the complex inter-relationships among gender and relationship type on caregiving experiences supports the need for family-centered interventions. This article also extends sex and gender research as it highlights that an in-depth understanding of the caregiving experience cannot be understood by gender alone and relationship type must also be considered.
Health and social care services can enhance the community experiences of people with Alzheimer's disease and their caregivers but making decisions about service use is complex. Using a grounded theory methodology, we explored service use decisionmaking in 40 spousal and adult children caregivers for people with Alzheimer's disease across the caregiving and disease trajectory. Participants' perception of their initial service interactions influenced their decision-making process and use of services. Difficulties navigating the healthcare system and finding available services also influenced decision-making. Caregivers make decisions to sustain care in the community that change throughout the caregiving and disease trajectory. Two key factors influence service use (a) the goals of caregiving and (b) the practicalities of accessing services. Both factors change across caregiving phases. By expanding our understanding of how caregivers make service use decisions, we can augment future practice to help caregivers access services that can better support them across the disease trajectory.
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